Category: my glamorous life

So the thing about having a chronic illness is that you still get sick. The thing about having a chronic illness for 25 years is that you get sick of getting sick. You’ve gone through so many special treatment regimens and so many relapse prevention workshops, so why do you still relapse? Because you have a chronic illness.

So what if you manage it so well that you live a rich and fulfilling life most of the time? If you’re really managing it all that well, then you shouldn’t relapse at all. I did all the right things. I still got sick.

They say it’s like a spiral staircase; each time you have another bout, it’s the same but different. I haven’t been on this ride since 2014, but the whole thing is nauseatingly familiar: ER trip, inpatient hospitalization, outpatient treatment, FMLA paperwork, short-term disability paperwork, doctor’s appointments and follow-up visits, holistic therapy, yoga, meditation, slow re-entry to work. Yadda yadda yadda.

The slow re-entry to work is reminding me of the biggest factor outside of my control: the current crazy project that’s causing me current crazy stress. Add to that the doubled commute to my office’s new location and a change of personnel on my treatment team, and you’ve got a recipe for another floor on the same damn staircase. On the days when I’m not in the office, things go pretty well. On the days when I’m working, I limp to the end of the day, and sometimes I have to leave early.

So that happened. Which is why I haven’t updated this website since May. And why the spambots are now bombarding my comments with almost-legible suggestions that I visit their questionable links to learn more about how to increase traffic to my website.

A website, by the way, which has a fundamental design flaw that makes the thing crawl along before loading a single page. To the point that my web hosting provider has asked me to fix a problem that has no simple fix. So, in the near future, I anticipate a major overhaul. That’ll be fun.

Three small miracles I saw today because I forced myself outside for a walk:

Two tiny finches circling and twittering around one another, one with a bright splash of orange on the top of its head, and another with a bright splash of yellow in the same spot

Three grey tufted titmice, who used to come to my feeder all the time when I lived closer to woods

A whole little flock of birds I don’t know how to identify, but who may be cedar waxwings: the size of a robin, but with a brilliant side patch of orange and an orange beak.

Also, deer tracks.

Some things keep happening in spite of humanity’s foibles. Even in times of great catastrophe, even in times of war and death and turmoil, the sun rises, the spring comes, the leaves fall, the birds migrate.

I’m glad you had your babies. I’m glad good people are raising the next generation. Your children are beautiful and special and I enjoy watching them play with you and take their first steps and say profound things at bedtime.

Sometimes I’m annoyed because it seems like some of you have lost your identity and spend all your time posting photos of your children, but then again I’m sure I annoy a lot of people with my endless photos of our cats and our garden — not to mention my #365feministselfie project. Continue reading “Open Letter to My Friends With Kids”

Creating my very first packet for the Lesley low-residency MFA program was both easier and more difficult than I thought it would be. It’s difficult to get over that voice of self-doubt in the back of my head, the one that says both “your work must be perfect” and “your work will never be perfect.” In one of her seminars, Erin Belieu observed that the voice of self-doubt is just as much ego as the voice of complacency and overconfidence. And it’s impossible to get into the flow state so necessary for writing when the ego is up.

Listening to the program’s professors reflect on their own practices as writers was a tremendous help to me. In a getting-to-know-you session with our mentors, I asked “what was the most difficult poem you wrote?” Their thoughtful answers led to some wonderfully deep discussions about the very reasons for writing. My mentor Sharon Bryan made a comment about a poem’s emotional truth that resonated with me. Even though poetry is a powerful tool that uses words in semi-rational ways to appeal to that emotional mind, it’s not something I’d ever heard talked about in previous workshops.

Rushing between off-site meetings, I carve out some time to sit and eat lunch in the lobby of one of the hospitals in the Longwood Medical Area. There’s a huge family at the table next to mine that has an entire catering setup — I guess to feed everyone who’s come down to support their loved one. They take up four tables and are eating delicious-looking Indian cuisine, speaking in what may be Hindi or one of India’s many other languages.

Seeing them makes me think about frugality, and how it requires you to stop worrying about what other people think of you, and about what it means to live in a multicultural society, and about how diversity is hard because humans are hard-wired to fear the Other, and also about what it means for me to live so far away from the support system of an extended family. I’m lucky to have a huge constellation of family-by-choice, and friends, and kindred spirits — I know more wonderful people than I can possibly have deep friendships with. But the bond of shared DNA runs deep, even with the low-level irritation that can develop among grown-up relatives. When I’m in the hospital, it’s my family that comes to visit me. And if they’re not related to me, I begin to understand who truly is my family of choice.

For better or for worse, that’s my life: to be a stranger in a strange land, even when it’s one I’ve lived in for years. Writers and artists often live at the edge of society. It’s what gives us the perspective and the fearlessness to speak our own truths about what we see. I’m most comfortable on the edges of things, observing the swirl and color of human existence — I see things that I wouldn’t if I were at the center of my own drama.

And perhaps it’s why I need the company of plants and animals to recharge myself. They speak a quieter language free of the body-mind duality that plagues humanity.